Caring for a loved one with Lennox-Gastaut syndrome (LGS) also requires thinking
about your home in a different light. Modifications might be necessary to accommodate
special needs. And as your child gets older, you will need to consider how best
to meet those needs in adulthood.
Home modifications
If your child uses a wheelchair, your home may need construction work to become
accessible. This means more than putting a ramp on the front porch. Wheelchair accessibility
may require widening doorways, rearranging furniture, and possibly remodeling certain
rooms to allow for better access. For example, safety bars in the bathroom may be
needed to assist your child getting in and out of the bathtub.19
Modest changes to your home can make life easier and safer. For example:
- Install tub rails or seats to help prevent falls in the shower.
- Lower the temperature of your household's water to prevent burns.20
- Put an intercom in the bedroom to listen for changes that might signal your child
is having a seizure.21
Safety measures
Because children experiencing epileptic seizures can hurt themselves, it is important
to think of safety measures that can prevent injury. Check your child's room for
furniture or sharp objects that could cause injury in the event of a seizure. Children
with LGS often wear
safety helmets to prevent injury during epileptic seizures.
Modest changes to your home can make life easier and safer.
Living arrangements for adults
Over 80% of children with LGS continue to have seizures into adulthood.22
You need to be aware which options exist to care for your child's future care and
living arrangements.
As your adolescent child approaches adulthood, a qualified individual can perform
a detailed neuropsychological assessment and assist you in obtaining guardianship
(necessary before the 18th birthday).23
Decisions about your child's future are difficult. You may find it harder to care
for a young adult than you did for a child. You may want to look into a comfortable
group home staffed by qualified people. Based on your child's needs, you may also
consider a program that encourages independent or assisted living.24
References
19 LGS Foundation. "Quality of Life." Web. Accessed August 21, 2009.
http://www.lgsfoundation.org/Quality_of_life.html
20 Epilepsy Foundation of Victoria, Australia. "Lennox-Gastaut Syndrome."
Web. Accessed August 31, 2009. http://www.nevdgp.org.au/info/epilepsyf/info/lennoxGastaut.html
21 Epilepsy Foundation of Victoria, Australia. "Lennox-Gastaut Syndrome."
Web. Accessed August 31, 2009. http://www.nevdgp.org.au/info/epilepsyf/info/lennoxGastaut.html
22 Rudolph, Colin David. Rudolph's Pediatrics, 21st edition, 2002.
Page 2260, column 2, lines 24-25.
23 Wheless, James M.D. "Lennox-Gastaut Syndrome: Family Issues" Epilepsy.com.
August 7, 2009. Web. Accessed August 20, 2009. http://www.epilepsy.com/epilepsy/epilepsy_LGS/family_issues
24 LGS Foundation. "Quality of Life." Web. Accessed August 21, 2009.
http://www.lgsfoundation.org/Quality_of_life.html